A personal quest: I admit to being hesitant about self management

Do you feel the same way? Well come explore with me …..

As a woman with a disability, I have felt disempowered by services in the past. For example, I require some personal assistance to prepare for the day. I have previously asked agencies if I could meet the carers before they come to assist me. This was never OK’d. So, my experience has typically been that 10 minutes after I initially meet a carer, I have to strip naked in front of them. I find this extremely dehumanising and disrespectful. It leaves me in an extremely vulnerable state. Many people with disabilities have and still are experiencing this. We have been too afraid to voice our complaints as services could be reduced.

However, we are at a time when this situation could alter dramatically.

In a previous post I wrote how I moved from my NDIS plan being managed by the NDIA (Agency managed or the Agency) to choosing a Plan Manager to help me manage my funds. My life has improved considerably.

I would like to explore Self Management for the future. I know people who are self managing. Flexibility, choice and control seem to be some of the positives of self-managing your NDIS budget.

But I must admit to feeling very hesitant about it. My first thought was “I don’t think I have what it takes to self manage”.

Is this true?

I’ve decided to figure out the answers to some of my questions and hesitations.

This piece explores some of the real benefits people say they get through self managing.

It also looks at whether you can get help to do it.

Along with my research, I interviewed an NDIS participant, Naomi, and the parent of a NDIS participant, Linda, to gain some of their perspectives of self-managing.

She who pays the piper calls the tune

If you chose the Agency or a Plan manager to help manage your funds, you do have a say, and to different degrees (which is why I chose Plan Management). However, you don’t have direct access to the funds allocated in your plan.

Direct access doesn’t mean you can just go spend money on whatever you want. You are still accountable. Like everyone, you have to spend the money to achieve what is says in your plan. You have to keep records and be accountable to the NDIA. You may be audited.

But what peaked my interest was something Linda said. She likens self-managing to the saying, ‘[s]he who pays the piper calls the tune’. This means the person managing the money gets to determine how it’s spent. With self-management, providers are completely directly accountable to you.

Naomi claims that, “For me personally, self-managing allows me to control the various supports I need.’

Naomi and Linda believe they have more flexibility over their supports than they would if they had the NDIA manage their budget.

Naomi claimed that, “It allows me more flexibility in choosing what supports are important and more choice of who will provide them and how they will be provided’’.

Everyone stated it gives them a clearer understanding of the amount of money they have.

More choice in support

I was curious about what this meant. I understood the NDIS meant that I could choose any provider I wanted, regardless of how my funds are managed.

With self-management you can get support from a provider of your choosing, whether or not they are registered with the NDIA . If your funds are managed by the NDIA, you can only use registered providers.

In my previous piece on Plan Management I explained how I used a small business person to offer me training and mentoring to find work. She is not registered as an NDIS provider, but is someone who has helped me achieve my NDIS goal in Finding Work.

Linda’s son wants to live independently with flatmates his own age. She wants to take a supported living approach that is tailored to her sons needs. She claims she doesn’t want him in a group home where he wouldn’t have any control over his life. Traditional service providers and/or the agencies may state that people with disabilities may have to accept living in group homes. However, with self-management Linda’s sons’ funding can be used in a creative way to engage a person with expertise in supported living to help Linda and her son go through the steps necessary to make this work.

You might know the therapist you want to use, for example, but they aren’t registered with the NDIA.

Both say you can get more for your money. Self managing means that you can search for the best price more easily, always bearing in mind quality. Having said that, it also means that providers don’t need to stick to the price guide, so you need to think about what is valuable to you.

You are in control of how your plan is delivered. If you self-manage you don’t have to have a registered provider offering you services. This includes mainstream providers. This aspect of self-management could be very freeing for participants.

Benefits in employing support workers

I am learning that there are a number of different ways you can engage support workers:

Make a agreement with a service provider to use their workers or employ workers you find

Engage an independent contractor

Use an online employer of support workers

Directly employ people yourself

There are new kinds of online services which help you engage contractors or employees.

When you are self managing, people said they can more easily do any of these options.

Self management especially makes it easier for people who want to employ their own workers.

Everyone stated that self-management has given them the opportunity to recruit and chose their own support workers. It has helped them move from feeling like a client (with associated feelings of burden and being powerless) to being an employer (empowered).

Naomi loves being in control of who she employs. Self-management has allowed Naomi to seek out and employ workers suited to her requirements. She stated that, with self-management, she has the flexibility to have workers whenever suits her (and within the limits of her funding).

There is a consistent theme about this with people stating variations of “ My staff are committed to my vision and goals and they understand what a good life is to me. I no longer have to say to my friends that I can’t stay because I have to be put to bed at 8pm—I am now in charge of my life. It is really empowering to know that I am in full control of my life and I make the decisions.”

Do I have to do all this on my own?

Linda claims that, ironically, ‘By taking on the responsibility and self-managing the funds I could have more flexibility and importantly delegate more tasks to others’.

Linda states that sometimes self-management is conveyed as a person having to do it all by themselves. However, a person can decide what they would like to take on and what they would like help with by someone else.

‘I am terrible with numbers. I can’t read a profit and loss sheet and really all I want to know is if the budget is on track- if we are over spending or not. So I have a bookkeeper to assist me to understand and keep track of the budget. He also assists me with the payroll for support workers’.

In fact, Linda also engages a key worker to lead her team of workers. She pays that person a little bit more and they have been able to take over many admin duties such as rostering.

Linda asserted that people can attend their NDIS planning meeting and say they would like to self-manage but they need assistance, especially if they have never done it before.

There are others who could assist as well

Support Coordinator – you may receive hours in your NDIS plan for help to implement it. This will be from someone called a Supports Co-ordinator.

A Registered Plan Manager – they may have tools that can assist you. You find a plan manager through the Provider list on the NDIS website and increasingly through other online service provider registers.

Recruitment agencies

A worker dedicated to making social or community connections

Local Area Coordinators

Peer support

Family, friends and others in your networks

You can request to self-manage all or some of the support budgets in your NDIS Plan. You may also choose to self-manage one part of your plan to get started and learn how to do it.

Comments

Hello Lauren,
Thank you for sharing your research and insights.
I am in the process of trying to move my Foster Son who has a mild to moderated intellectual disability into public housing. He is trying for independent living with support when needed.
He is on the housing list and registered with NDIS(has not had the interview yet)

Your information has caused me to rethink how to manage funding when it comes.
Cheers for you!! Helen

Hi Lauren, really enjoyed your article and pleased to read self management works so well for many. Particularly when it comes to people being able to have a normal social life and employing care staff they are comfortable with.

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